Thursday, June 9, 2011
My Husband Steve has a Liver Disease
The Disease: Primary Sclerosing Cholangitis
This disease starts as inflammation in the bile ducts and progresses to scar tissue which eventually spreads to the liver causing cirrhosis and liver failure. There are numerous possible complications, some of which Steve has, some he does not have--so far. He was diagnosed with this disease in 2007. We have been blessed to have gone this long without too many problems, but now the disease is progressing, and all the doctors agree that it is time to look toward liver transplant.
Steve goes to The Liver Institute at Dallas Methodist Hospital. Methodist has a long history as a leading transplant provider. We are very confident in their capable team.
The Transplant Evaluation:
Steve recently underwent a Transplant Evaluation. To get on "The List" that we all hear about, a potential candidate must go through a battery of medical evaluations to determine if the person is healthy enough to survive the transplant and the medications that will follow. Steve is in great health other than this disgusting disease!
The Transplant Team meets on Thursdays to decide who is an appropriate transplant candidate for "The List". We will hear about this later this week.
MELD Score:
This is how people get ranked on The List. It is calculated from 3 lab tests. Right now we do not know his MELD score. The surgeon thinks it is probably going to be between 10-and 13. In this region a person needs a score between 25-30 to move up on the list for high priority.
With Steve's disease it could be years before his MELD score is that high because the lab value that will worsen the quickest gets the least weight in the MELD score calculation. And Steve needs a liver sooner rather than later because the longer he has his own liver, the more likely he is to develop cancer in his bile duct, known as cholangiocarcinoma, one of the possible complications of his disease.
The good thing is that while he may not shoot to the top of The List, he can take a liver that isn't A+ quality which someone else higher on the list rejected and be cured! Because Steve is in such good health otherwise, he does not need a super duper healthy liver; he can take a less than perfect one, and that liver will eventually catch up to his great health. yay!
FAQ’s
How did Steve get this disease? No one knows. The disease is difficult to research because so few people have it. At any given time there may be 1000 people in the US with PSC. They know it is not genetic.
- What will happen if Steve doesn’t get a transplant? Let’s just not go there. Short of divine intervention or transplant, the progression of this disease can be pretty nasty and end badly.
- Can he take a partial living transplant? Partial transplants from living donors are done less and less because of the very high risks to the donors. They have to harvest 2/3 of the donor’s liver to give to the recipient. For someone Steve’s size, that would require a really huge donor! Even so, it is a very very poor option and is done in a rare few hospitals in the country.
- I thought the liver regenerated itself. Why doesn’t it just heal? When the body is attacking itself, as is the case in this auto-immune disease, the liver just gets sicker and sicker and drags the rest of the body down with it.
- Isn’t there a medicine he can take to treat it? There is no known effective treatment. The medication Steve took for the last 4 years has recently been shown to improve lab scores while the disease continues it’s progression.
- How much does a transplant cost? I do not know the cost, but we have great coverage with our insurance! That said, there will be my time off of work, medications, and who knows what else. We are trying to get our ducks in a row so that we will be as prepared as possible.
- What can I do to help? First and foremost, pray for Steve’s health, for us to make some lifestyle changes, for the kids and for a new liver. We may wind up having fundraisers later on. We’ll keep you posted. Right now we are just trying to get the renovations completed on our home so that the stress burden will be lightened on all of us.
I hope this has been helpful and has answered your questions. If you have anymore questions, please feel free to email me.
Lisa Redding
lisareddingpt@mac.com